Rally For Remmy

$50,915 of $50,000 goal

Raised by 805 people in 10 months
Created January 8, 2018
As many of you know, Remmy is at Boston Children’s for an undetermined amount of time. While there, she will undergo multiple surgeries. Your donation will help with incoming medical expenses, as well as accommodations so Reece and Stephenie can stay close by at all times. Thank you for your support, thoughts, and prayers. If you are inclined, please feel free to share! We would be happy to answer questions and provide updates. #rallyforremmy
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On this day, Day 45, we take our baby home. Remmy resided in the MSICU for 27 days, the surgical inpatient floor for 10 days, and Spaulding Rehabilitation for 7 days. While we experienced this together, I will in no way minimize that her experience has been beyond harrowing. We have watched in UTTER amazement as she recovered and adapted in ways we knew we could not, if in her circumstances. This child is an amazing person. She will grow up knowing that she is SO STRONG AND BRAVE. I will, likely, try to make sense of this event for the rest of my life, but I do know that our daughter will continue to be happy, and play, and laugh, and throw tantrums, and do the things that toddlers do.

We still have some hurdles ahead, though a little less intimidating than those first few weeks. The next month includes multiple follow ups, and a surgery to repair her right eye lid. She gains stength every single day. We watch it happen. Over the years, her recovery will just be a memory, and one that she is expected to not remember. We will always support her mind, body, and spirit, and she will know this story as she grows. One of the most important pieces that she must know is how incredibly supportive and loving our community has been to her. I have said it before, and will say it again- we are absolutely overwhelmed by the kind words and actions from family, friends, and strangers. We know it has made a positive difference in her recovery. Thank you, always.

Stephenie Schauberger Goulart
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Today was a big day for Remmy. She has been transferred out of Boston Children’s to an inpatient rehab where we will work with specialists to get her to a place in her recovery where we can go home.

She has made some amazing accomplishments over the last 10 days, including getting a speaking valve for her trach (meaning she can tolerate breathing through her nose and mouth while using that sweet little voice!), eating purred foods on her own, and swallowing consistently. She is back to baseline, physically, and can barely be contained.

We are at a point where we are relieved that she is feeling herself. She is doing the things she did before, playing and moving around. Playing peek-a-boo and asking for ‘more’. She has at least 2 surgeries in the coming months, but she has shown endless courage. She continues to persist and we are taking some lessons from her. Thank you for the continued prayers.

Stephenie Schauberger Goulart
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Moving day- Remmy has been officially moved out of the MSICU and to the regular surgical inpatient floor. She has seen many successes over the last couple of weeks and is CRAWLING. She is pulling herself up with little support and is quickly reaching the place she was before, physically. She will need intense therapy for eating, but we will know more about those next steps in the coming week.
Meanwhile, she will continue receiving nutrition through her G-tube and breathing through her trach. These aspects of her recovery, while longer lasting, will be temporary and assessed for removal in the months ahead. She astounds us with her resiliency and has adapted so well. Her next surgery is scheduled for April to remove the titanium plate that is helping to support bone growth around her right eye. By that time, the bone should be healing well on its own. Her eye is functioning normally, although she is limited on how much she can open the lid. Swelling and continued healing should help her lid improve over time, paired with surgeries down the road.
At this point in time, our stay is dictated by the weaning of the remaining drugs. She is so strong, and healthy. She is smiling and playing. She is holding that tiny, chubby hand out to high-five anyone who is willing. We will leave this hospital with a very happy and healthy toddler, who beat many odds to say the least. She is such an incredible person and we are incredibly lucky to be her parents.
That being said, we will continue to update as we know more about her last steps between Children’s and possibly transferring to an inpatient rehab to help her gain more strength before we can return home. We still sit in amazement at all of the support and love Remmy (and we!) have received through this. We appreciate everyone’s efforts to comfort us and guide our family to feel ok. The most important thing is that Remmy will be ok. She is an amazing child.
Thank you.
Stephenie Schauberger Goulart
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She is awake! Rem Baby is awake and giving her doctors and nurses a run for their money! The paralytic and sedation medications to keep her still and asleep while she healed from her latest and unplanned surgery last Thursday (to replace the original plate with titanium on the right side) began to wear off over the weekend and those little finger wiggles gave us such excitement! She is now fully aware of the environment and people around her.
Next steps include continuing to wean her from the medication drips she has been on for the last few weeks and continue to gain strength. Again, we can not even begin to understand the kind of talent these medical professionals posses. They have done amazing things for Remmy and while she will continue to see some of these surgeons through her childhood, they give us immense hope that she will return to the bouncy, happy baby she always was.
We will always thank everyone, friends, family, and strangers for the incredible support Remmy and our family has received during this time. Is has undoubtedly made a difference in her healing and given us strength. Thank you, again. Remmy is such an incredible little human being and we are excited that she is now smirking at us and proving that she will be ok.

Stephenie Schauberger Goulart
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$50,915 of $50,000 goal

Raised by 805 people in 10 months
Created January 8, 2018
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